In Their Own Words – Our Time of Hope

This “In Their Own Words” is written by Matthew Asner, a film and television producer. He has a son with autism and has dedicated himself to working with charitable organizations such as Autism Speaks and fighting for the rights of those with special needs and in special education with his organization, Save Special Education. Asner was nominated for GQ’s The Better Men Better World Search. If he wins the competition, Autism Speaks will receive $10,000.

“We must accept finite disappointment, but we must never lose infinite hope.”
– Dr. Martin Luther King Jr.

I begin and end this post with quotes about hope. It is hope that drives me. It is hope that brings life to every second of my day. With so much hardship around us these days, hope is in short supply. We need our friends and neighbors now more than ever.

Four years ago my son was diagnosed with autism. Of course, this was devastating to me and my wife. I have a brother with autism and I had seen the constant struggle by my father and his wife to make sure my brother had consistent and appropriate help. I knew firsthand that the diagnosis of autism meant that raising my son would require a different, more demanding manner of care than that of his older, typical brother. But, when one of my son’s doctors told me that she didn’t believe he would be able to care for himself in the future and that we should make arrangements for his care, it was as if a gun went off in the examination room – BANG! She had just killed my hope. Murdered it in cold blood.

I walked to my car and sat for a while. I was close to tears and I knew my wife was crying in her car. A horrible thought came into my head. Why couldn’t she have told me he had cancer? At least then we would have a fighting chance. I walked around in a hopeless cloud for a year or so.

After attending my first Walk Now for Autism Speaksevent, I realized that there were a world of people who wanted to feel the same way that I wanted to feel. My hope had been restored. The Walks made me a believer in the phrase “there is safety in numbers.” This is when I began to get involved with the special needs community.

As invigorating and empowering as those Walk days are, unfortunately, in daily life the autism community is fractured. Race, class, disability and, most of all, fatigue fracture us. All of this makes it difficult to come together and stand as one. At an Autism Speaks Walk, we stand as one. The time has come for us to do this every day.

As you all know, our economy is in terrible shape. As a result, the special needs community has seen programs slashed or eradicated completely, making it increasingly more difficult for families to deal with the additional stress. In these trying times, it is imperative for us to come together as a group.

Next time you are at a Walk, look around you. There will probably be 10,000 to 20,000 people there. We are an important voice. We are a passionate, strong group. And I hope being together makes you feel the same way it makes me feel. When I am at a Walk and I talk to people and take part in this energizing union of people with at least one common issue, I feel motivated. I feel power. Most of all, I feel hope.

It is up to us to take what we feel on those Walk days and incorporate it into our daily lives. If we are truly going to change the world and make it a better place for our children, we have to do it together. We have to join groups, and write to and demand representation from our elected officials, school superintendents and school boards. We have to know our rights and fight for what we are legally entitled to when we go into IEP meetings. We must find ways to be less intimidated by the process.

This can be our time – a time where we all come together and stand for the rights of our children and our rights as parents of a child living with autism. If we are alone, we are without hope. Together, we can change the world and make hope live.

“Hope is the companion of power, and mother of success; for who so hopes strongly has within him the gift of miracles.”
– Samuel Smiles

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

My son with autism Devin is 24 I don’t know what a full nights sleep is and never have. Most important I remember the day I visited a group home at the insistence of His Special Ed.Director. Let me tell you when I left my chest hurt so bad and I could not contain the tears. God gave me this child for a reason and I have to remind myself there is a plan. So every day I hope for a good one and when they are not I pray that they are over soon.

My grandaughter Kaity is almost 12. After much fighting with the medical oommunity and resources Kaity was finally officially diagnosed Autistic at age 3. Our family knew long before we recieved the “offical” diagnosis what Kaity had. I have been fortunate enough to have been closly involved in Kaity’s life from the moment of her birth. For a time she lived with me. I understand the locks on everything in the house. The sleepless nights, the IEP’s begging teachers for equipment and more therapies for her. Fighting the Florida social service system that is apathetic at best with regard to providing alternative affordable options. Kaity has been on a long term waiting list for whatever form of residential care some will benefit from. Her 7 yr old sister,Amy,is as normal as anyone or anything can be in a household dealing with severe autism. My daughter struggles with the guilt that the autism brings to so many areas of her life. This past Wednesday she was informed that a home for Kaity has been found. Our best dreams and our worst nightmares realized all at the same time. The home is that of a foster home with several normal children. Both parents have recieved extensive training in all aspects of behavioral issues and needs of these wonderful children. The mother has founded 2 group homes in her area and remains active in the Autism community. Unfortunately,due to the economic and employment market at this time the father is working out of state in Georgia. He comes home every weekend. Despite the intense emotions this situation involks and after serious prayer I believe it is in Kaity’s best interest to go to this home. There are many questions that need to be answered and much to be researched about the people and background of the foster family. Goals for Kaity need to be set and discussed. She will be living in Ft.Myers which is a 5 hr drive for us. I know you all know about this kind of heartache and emotional tidal wave. Too many questions to ask,too much to digest and come to peace with. I very much need and want any and all advice anyone can offer. I’m not sure how to support or what to say to my daughter to help her through this. I know I need to be a committed listener and allow her the opportunity to have a safe place to bring her fears. I have never been more than 3 days without physical contact with Kaity. How do I let go even though I know this is not about me at all. This is about what is best for Kaity.
Thank you
Christine E.Hutchinson

Keep praying for the Lord’s guidance. I am also praying for you, Kaity and your family. My son is 6 years old and was diagnosed autistic at 2. I have not been able to afford all the therapies that he needs…. only received the basic 90 mins speech and 60 mins OT per week in the Florida system. That Medicaid Waiver waiting list is a joke and I had to fight and cry in the IEP meetings just to get the basic. However, in the last year Branden has been making astonishing improvements. It started with putting him in a small special needs private school with the McKay scholarship where the staff is unbelievably loving and devoted to the children. I changed his diet cutting out junk food and leaning toward the casein free/ gluten free foods (very hard because he is an extremely picky eater). Added supplements (probiotics, calcium, magnesium, cod liver oil, glutathione, etc).

On my end, I changed my attitude: stopped feeling sorry, angry, hopeless, etc and became determined to not only help him get through each day but also heal him. We smother him with love and laughter: hugs and kisses every chance we get. Most important is that I placed my trust in the Lord and turned it over to Him and He has been answering my prayers and the prayers of my wonderful family and friends. Every day I am amazed at the new things Branden is now saying and doing…. he has a great sense of humor. :-) He still has a long way to go but I am confident he will get there.

So just remember that any and everything is possible when you put your trust in the Lord. God bless and guide you and your family and those that will care for Kaity.

Sophia

July 27, 2010 at 9:55 am

Hi Tanya,
I totally agree with you. My 5 year old son was diagnosed at 3. He is still non-verbal. We too have to contend with the limited OT and Speech he gets, but we do some on our own. I am going back to school for speech therapy so that I can help him more. God has been our strength throughout this experience as well. When people tell me how sorry they are for him, I tell them not to be. Aiden is amazing. God has placed him in our lives to do great things. Whose standard is normal? Maybe we are the ones that are not normal. We are the ones who are not enlightened. My son is a miracle and we treat him as that, finding out the things he loves and channeling his energies into that.
We too have the McKay scholarship, but are finding a hard time locating a school in South Florida that will address his needs. Where does Branden go?

I’m new to this site and don’t know quite what to expect. When I wanted to submit the information that my comment was not right was given. So here is my comment. God really loves us to trust us with these incredible special children. I pray we will all find the answers we so earnestly seek. Christine Hutchinson

Christine, I can relate as many who read these comments can. My mother is a “hands-on” Grandmother like you and she doesn’t go a day hardly without seeing my son who was diagnosed with autism formally at age 5. I have a friend who recently had to make the decision to send her son to a group home…I feel her heartache every time she crosses my mind which is often. I, too, think about if I will ever have to make that decision and it scares me to death. God gave my son to me and I always want it to stay that way. I have a “typical” daughter who is Bryan’s (my son) twin. She is so understanding about the special way I have to handle things when Bryan is concerned and I worry that I take away from both of them but I will say as they’ve gotten older (almost 12 now) it has gotten a bit easier. I know all the difficult dealings with teachers and schools and will have to learn a whole new school this year as the twins will both go to a new middle school. My applause to you for being such a big help to your daughter and grandchilren. I always believed that God gives special children to special people…I feel blessed! My best wishes to your family and Kaity!

Our daughter was just diagnosed finally at the beginning of July. The signs have been there since she was born if only I had known what I was looking at. When it began to dawn on me everyone around me denied it. Family friends, I struggled so hard to get anyone to listen. Instead I was judged as being a horrible mother, why was my house never clean? Why was she always naked? I was judged for not getting her to a doctor by the very people that refused to help me take her, family no less. For years I have had to struggle on no sleep while taking care of 5 children and alwys it’s people judging and judging. I almost cried in relief, now that we have moved and I have been able to get her to a doctor, get her diagnosed… people LISTENING! I felt like a huge weight had been lifted off my chest after years of searching for answers, cringing whenever I talked to people about her, fear of judgment and yes, before I came to terms with it, the very same wish, that it was some physical illness instead. I worry for the future, but sometimes, the diagnosis itself is a relief. I have cleared the first hurdle.

I have a grandson who was diagnosed with autism at 2yrs old and he is now going to be 10 yrs old in November. It is a constant fight to maintain the services that were said to be provided in his IEP. We have come to a place where legal help is necessary but my son’s business has failed and his wife needs several operations that they can’t afford and her deductible is over 3,000.00 Dollars. We are looking for information or donations that can be used to pay the lawyer fee. If we succeed it will set a precedent for other childlren who are having the same problem. Write us and share you ideas or generosity with us.

My son has autism. He is 13 years old. We live by hope, we have seen the hand of God on our son. At the age of 2 years, doctors were gloomy. Jeffrey wasn’t! Engrossed in his likes, we used his great passion for Nascar,auto-racing and computer graphics and encouraged his every waking hour with his likes. When he lost language skills, I would sit and spell and write out his favorite things, spelling in long lists his favorite words. Today, Jeffrey has his own charity that he started out of great passion for other kids in need. His compassion for others is intense. He was just 8 years old when he started his own charity by saving his lunch and chore money. It was also the same year that he started racing bandoleros at Charlotte motor Speedway, along with winning the National Science Fair and National Geography Bee. He is so improved that most don’t even realize that he struggles with autism. His charity has helped over 5600 kids. But he knows that it wasn’t him that has helped so many, but his hope and faith in God. It’s not excepting the words “you can’t”, but the words” you can”. When others said there’s no way this child will ever be able to function as a race car driver we embraced his desires and used it as a tool. Yes he’s only 13 years old but he now has stepped into Legend car racing and his charity is very successful. He builds and maintains all of his own websites and pretty much runs his own charity. Jeffrey spends much of his free time sharing about autism and how hope exists. Check out http://www.jeffreystoycloset.com. And thank you for sharing your story.

I have a 19 yr old son with Moderate Autism…Mr. Asner..My husband and I alwayshad put our hope in God our Lord. Throught the yrs of struggle with our son wasn’t easy, but one day we got together in our room @ home , kneelt down and prayed as a couple telling the Lord, We leave Isaac in your hands, we beieve our son soon was going to be healed and transformed in a special way. As the yr went by my hubby and I saw the changes, tremendous changes in him. Our son in HS becamehonor student four yrs. Passed his drivers Ed, he like to draw , sktch cartoon, he sold on of his art in HS. Plays the saxophone, performs in HS musical broadway show, graduated from HS, and he is ready to go to college, shvaes his beard, makes his own coffee and cooks his own meals and in church sevice, once in a whilehe will pass up to the pulpit to red a chapter from the bible. What i am telling you is let God guide you, let Him take care of your son, believe God will restore your son, put your hope in Hm. In God’s will you will see changes and you will be full of tears of Joy, those same tears when he was born. Thats what my husband and I did, Isaac has worked in summer jobs, I would drop him of at the bank he would do his own tansaction, I mean God does miracles still. Just Believe in Him, pu your faith in Him, and you & your wife will see results. God bless you..and remember nothing is impossible for our Lord!
Carmen

My son Matthew is 20 years old and has autism. Life is far from easy or normal but I guess we all learned to adjust. Right now he has an eye infection or pink eye we’re not quite sure. He won’t let the doctor get close enough to examine him so it is difficult to make an accurate diagnosis. Hopefully by Monday he will feel better or we have to contact the doctor. As parents of children you all know how difficult it is taking them to be treated for an illness. And it’s so sad because he stays in his room all the time now, we go in out to give him eye drops wich is really a battle, we practically have to sit on him to do this. But he is loved dearly and we will do everything we can to see him get better. I just wanted to share my experiences with autism with you to let you know you are not alone.

so many of us arn’t alone in this when my son was 6 it was 1 in 1400 now it’s 1 in 70 for boys 1 in 110 for girls in arkansas. the children whom can’t speak or inner act in anyway will have some help ,but for children like my son whom can do somethings help is hard to find i would hope all of us could someday get on the same page and call our goverment offices everyday for a year and tell them find out what is going on.make them stand up for these kids. i say “today one mothers problem tomorrow a nations” something has got to be done. we know some about cancer and aids… but we are still guessing about autism.please call themtell them.

My son Bryce is 7 and he has Autism. I will never forget the day he was diagnosed. I remember having to pull my car over to the side of the road on our way home from the evaluation because I was crying so hard I couldn’t see to drive. I realized Bryce’s life was forever changed and we would never get the little boy back that we had. God had given us this special little boy and trusted us to guide him through his journey. Hope is what gets me through every day and I think about all the other families who are going through the same process we are. I believe that Bryce’s disability has made us stronger as a family and we know that we need each other to lean on during those difficult and sad times. I know in my heart that Bryce will someday be able to face the world without fear and I will be there cheering him on. Pass on the message of hope to someone you know that is struggling to handle the diagnosis of Autism.

I had twins..one boy who was diagnosed with autism and a girl who was diagnosed with pdd/nos..I am married and she had a child from the previous marriage…my wife was recently diagnosed and put on disability for rheumatoid arthritis..I have a pretty full plate most days..I feel anxiety and stress..I quit smoking almost two months ago so I can be here longer for my family..I am trying to do online schooling from home to be an electrician and that is hard..my relatives are distant or dysfunctional or in jail..I have times where I see myself go crazy..but I dont..!! Instead I say thank you God for all that I have for and all that I have become..without out you I would be worse off than I am now..I give it to HIM…and I survive and learn better management technics to deal with things better..I love my family so much and that love helps me see its not always about me…